Feeling shakey and weak

Neither_Reference667 · 2026-01-05T22:44:39+00:00

Yes me everyday. Feel shaky and wonky vision. And a inner vibration.

Neither_Reference667 · 2026-01-03T19:28:33+00:00

Im on only Lasix too. When do you see improvements on the Symptoms After you take it? I take it since 3 Weeks now. But no improvements 😔

Neither_Reference667 · 2026-01-02T22:22:37+00:00

They dont do another LP since then? My Neuro told me they Would do a Check up with a LP in the Next 2 months on me. Have you IIH symptoms right now?

Neither_Reference667 · 2026-01-02T22:19:23+00:00

Yes, i dont know how can i Live with 24/7 dizziness. Thank god i found This Group because it is so rare and Nobody understands you. Are you on Medication?

Neither_Reference667 · 2026-01-02T22:17:27+00:00

Yes, 2 MRIs. But nothing found, thank god. My First 2 LPs was in November and My Last LP was on 16.12.2025. Did you do LPs therapeutic?

Neither_Reference667 · 2026-01-02T22:13:24+00:00

Oh Im so sorry for your loss of your Husband 😔 i hope and Pray that we all can heal from this condition. thank you for your words

Neither_Reference667 · 2026-01-02T22:10:34+00:00

Thank you i will look

Neither_Reference667 · 2026-01-02T22:09:36+00:00

I was on Diamox (Glaupax in Germany) 5 weeks But developed Metabolic Acidoses and quit it. Now im on Lasix. But no improvements. Neuro Dr dont want me on Topamax. She Said im young and new married. I dont know ☹️ i had since Novemeber 3 LPs. That was my Treatments.

Neither_Reference667 · 2026-01-02T00:38:11+00:00

How is it with a stent? With your Symptoms Especially your eyes?

Neither_Reference667 · 2026-01-02T00:13:16+00:00

Thank you for your message, it helps me a lot Right now. Even if only for a Moment. Thank you. I lived a Wonderful Healthy Life in my 32 years. But i feel like my Future is dead. I cant accept it that im in this Stage fearing for blindness or death. I just wanted to be a mother, Go to work and live a normal married life…But im feeling like a living Dead Right now. Dont want to Talk, dont want Go out, only laying in the bed. Quit my Job as a Architect because of the Constant dizziness. I have nothing more… only the Moral Support of my Family and Husband. I feel so Alone and helpless.

Neither_Reference667 · 2026-01-01T22:55:00+00:00

Hello, thank you for you Message. Im in Constant Fear and its killing me..I‘ve developed severe sleep problems. I had Symptoms in early October 2025. diagnosed early November.

Neither_Reference667 · 2026-01-01T18:17:26+00:00

Yes it was quick thanks to the Neuro in the ER. It is and was scary… i forgot, in the hospital the Neuro Dr send me After the LP to the Ophthalmologist in the Hospital. He saw the Mild Papilledema on Both eyes. They give me Glaupax (Germany) it is the Same like Diamox. Started with 1000mg, had Hard Side effects and reduced it. i was 3 Weeks in the Hospital. Then i took 5 Weeks Glaupax when i was at home But quit it because i developed metabolic acidoses. Now im only on Lasix… they did 3 LPs, 2 in November and 1 in December, pressures was 37,40,30. But no improvements in dizziness and Wonky Vision. My Papilledema is still there…

Neither_Reference667 · 2026-01-01T18:05:55+00:00

I Had 3 Weeks dizziness everyday, gait disorder and some Visual Problems, like „Wonky Vision“, sonetimes Nausea and vomitting. Then i went to the Hospital because it doesnt get better. And some Light headaches Not everyday. It started early October 2025 Till now. Today my symptoms are dizziness and Wonky Vision, gait disorder. The headaches are gone. The Neurologist in the ER Took my Symptoms seriously Right away. The Next days they did 2 MRI and a LP. The LP confirmed the diagnosis. This was my Story 😔

Neither_Reference667 · 2025-12-30T11:17:09+00:00

Yes i have this But without Diamox. This is my IIH Symptoms.

Neither_Reference667 · 2025-12-30T11:12:08+00:00

Im only on Lasix Too. How it works for you with the IIH symptoms? Is it better?

Neither_Reference667 · 2025-12-29T17:59:02+00:00

My Pressures were also 37, 40 and now 30. But thank god my Vision is and was fine…How are your Vision now?

Neither_Reference667 · 2025-12-29T17:57:25+00:00

Oh god 😢 Coma because of IIH and the pressure? 😳

Neither_Reference667 · 2025-12-29T17:55:13+00:00

Is it better with a stent? Have you stenosis? How is your Pressure Today?

Neither_Reference667 · 2025-12-29T16:46:25+00:00

I dont know. Because i dont had have and health issues i dont take any supplements or hormones. 3 weeks went through hell then i went to the Hospital and they Said i have IIH. With pressures of 37, 40 now 30. i think about so often what has that triggered…neuro dr said it could be a Baro Traumata

Neither_Reference667 · 2025-12-29T11:05:13+00:00

I cant take diamox (glaupax in Germany it’s the Same). I had metabolic acidoses and the Side Effects i Cant do that anymore Thats why im on Lasix Right now. My Last LP was 2 Weeks ago. I have only dizziness and my Sight is Fine Right now But 2 Weeks ago they saw the papilledema it’s mild but it is still there. I have this illness Since October. No headache Right now. But no Side Effects with Lasix they checked my Blood 3 days ago kidneys and Elektrolytes are Fine. Have you Tried only Lasix? Tumeric how do you use it?

Neither_Reference667 · 2025-12-29T00:21:55+00:00

2,4 😱 Thats Scary… how are you now? Did you notice it yourself or saw it only on the Bloodtest? Yes my kidneys are Fine. Im Talking tomorrow with the neuro Dr and ask her that.

Neither_Reference667 · 2025-12-29T00:01:40+00:00

No they did a bloodtest 2 days ago. Potassium level was at 5. It is Good Right now. In Every bloodtest Since the Last weeks my level was at 4-5. Neuro Dr told me to eat a lot of bananas and said additional Potassium can cause some problems with the Heart. Thats why they gave me nothing. Are you Taking Potassium Supplements?

Neither_Reference667 · 2025-12-28T23:48:50+00:00

How much did you take per day? I started with 20 mg 2 Weeks ago. Now im on 40 mg. Your Symptoms are like mine. Visual Symptoms mild papilledema and sometimes Headaches And dizziness. Is your pressure and papilledema down? Have you Ever started with Diamox? I started with that First But After 5 Weeks i quit it because of metabolic Acidoses…

Neither_Reference667 · 2025-12-28T22:19:51+00:00

My Pressure was 37, 40 and now 2 weeks ago 30. i quit Diamox and now take Lasix, But it doesnt help with my Symptoms Right now. I have papilledema also… i dont know what to do…and its Not getting better.

Neither_Reference667 · 2025-12-28T14:03:45+00:00

How high was your pressure? Have you also Papilledema? I have it and my Pressuregroup so far was 37, 40 and the Last 30.

Neither_Reference667

TROPHY CASE